Minneapolis Pride and HPP: Invisible Acceptance

I recently had the chance to visit an event known to many as the main celebration for the LGBTQ+ community, Pride. The vacation was all planned, two whole days of concerts, clubs, shows, festivals and more. For those with HPP this can be exhausting and painful just to think about. And for the most part they would be right. Take a second and think about the difficulties a 28 year old with an invisible illness goes through when trying to keep up with other youngsters their own age during a massive summer event. Starting with the parking. If you have ever gone to a festival or major concert of any kind you know that parking can be a real bitch. You can expect to pay a ton and walk two plus miles to get from your car to the actual outskirts of the event. Many places, though having handicap parking, are still wholly inadequate for those with more severe and obvious disabilities. Given that I was going through a particular rough spell with pain in my SI joint I really was hoping for something semi close and easy to walk through so I could use all my energy to enjoy the festivities. Having been to other events I was worried after we had circled several times only to find nothing available and people flocking from miles around. So taking the chance I wouldn’t be looked at as the typical “faker” of a disabled tag I am used to I pulled over and asked a police officer if there was any designated handicap parking. He very polity and with a smile replied that there was a whole street blocked off for that purpose and then explained how to get there. This was my first bit of excitement, designated parking nearby, so there was a shot! After finding the street I pleased to find a spot open immediately, near a sidewalk, and near the festival restrooms, which also btw’s had a handicap port a potty. Normally when I put up my placard I get a sense of worry, like people are judging me and that this might be the time I come back to a nasty sign on my windshield. But something was different this time, no looked twice and I felt immediately at home and comfortable.

After parking we began the adventure of Pride festival. Being that anything can happen I tend to look around first thing and try to identify staff, emergency personnel, and first aid tents. Again I was pleased to pick out staff easily as well as officers on bikes, on foot, and golf cart, riding and walking around ensuring everyone could thoroughly enjoy their time. This always makes me feel better for the “just in case” scenario where I fall wrong or get run into and something terrible happens requiring immediate medical attention.

To my great joy and surprise, I was able to keep up with my friends for the whole day as we walked around. Normally I have a limited amount of time determined by how much and when I take pain and pre meds to prepare for an eventful day. However being that I was post Lidocaine infusion I was doing particularly well and thought I would try going without. For the most part I did great. I never had to be the one to stop and take a break, or sit down and rest, and we didn’t have to leave early for me because of my pain. Last summer this never would have happened, and because of my disease I never would have noticed what a great event to go to if you have a disability or need a little more security when going to festivals. I had a blast and people were friendly and accepting wherever we went. There were hundreds of booths and rows dedicated entirely to single subjects.

There was everything from pet adoption, to different religions, adoption and fostering, medical care, dental care, insurance, education, the list goes on and on. The culture was extremely diverse and truly a pleasure to have the chance to experience. Those working the booths were always more then happy to share their product/service or simply point someone in the right direction. Not to mention the free swag they were giving away was a major plus in some cases.

As we wandered around what quickly began to resemble a wonderland fit for Alice I noticed the number of service dogs and ESA’s around, as well as extra seating and places to rest. I always love to take my service dog with me when I go places as he can carry things for me if I am having a bad day, or I just need the support and a friend to help tell me when I pushing myself to hard. But sometimes it makes me very uncomfortable in public as my dog doesn’t look much like a service dog, and to be honest I don’t look disabled. But here I felt things would have been different. The air itself was tangible with acceptance, regardless of whatever, or whomever may be accompanying you.

The next thing I found surprising but also awesome was the food selection. As many people with rare diseases know there are almost always some sort of dietary guidelines or restrictions that go along with the disease. This can mean finding food when you go out can be difficult unless you wanna have a “cheat day” and pay for it later. But at the Pride festival there were several choices that allowed for many different diets from vegan, vegetarian, paleo and more. I was happy to not have to think to hard about what I was ordering. There were also plenty of places to get a drink and dispose of the garbage afterwords, but there were also no restrictions on bringing stuff in. Given that alcohol was the one exception since the festival did provide the traditional beer tent, you were allowed to bring bottles of water or Gatorade to stay hydrated on the semi warm day.

Later that night I was able to attend a small show put on at LUSH , a traditionally gay bar playing host to some very entertaining acts. While enjoying the atmosphere and people watching I was able to meet some to the Drag Queens whom were there to perform. For me this is always fun and exciting as I consider Drag Queens to be literally walking pieces of art, and have followed RuPaul’s Drag Race since the beginning. They were amazing and wonderful people. Never have I felt so normal and comfortable with people as I did when talking to the queens of LUSH. In particular I had the pleasure to meet the lovely and talented Shangela Laquifa Wadley. She approached me with warmth and smile despite how tired she must have been. She spoke softly and made me wish I had more of a chance to sit and talk than just a quick fan to fame moment. But despite this I was able to get a few good photos together and give her my business card directing her to my website here! As silly as this sounds that small gesture made me feel so good. I had just had the opportunity to pass on some knowledge, and possibly educate someone with power about one of the zebra diseases. Giving her my card was a huge leap of faith and to be honest at 2:30am I wouldn’t blame her if she lost it or never bothered to look. The point was she was kind and took the card, and I had the chance to spread the word about HPP to someone who matters.

The last step in my journey through Pride was to attend the cant miss event, the parade. For miles the street was lined with all manner of people in all manner of dress. We had been running a little late so naturally I was concerned I might have missed the best parts but whether it was fortunate or not a “Black Lives Matter” protest in the middle of the parade street had delayed the start of the the parade by nearly an hour. I was somewhat baffled as to why the protesters choose that place and that time to express themselves since it was interfering in an event meant to promote acceptance and equality for all. Despite this my friends and I were able to locate a decent position where I could comfortably stand or sit and watch or take photos of the parade. It was such a great time to see so many people openly expressing their true inner selves. I loved being able to capture the souls of some of the parade walkers who truly shown. It is not often that people allow us to see that intimate part of themselves that at our core defines us. To capture in on camera was a challenge and pleasure.

I definitely plan to attend this event in the future and I hope you all enjoy the article and the photos. Some have been edited some are just as they were taken.